Aims: The purpose of this study was to conduct a systematic review answering the following questions: (a) what specific activities do caregivers (CGs) contribute to patients’ self-care in heart failure (HF)?; and (b) how mature (or developed) is the science of the CG contribution to self-care?

Methods: MEDLINE, EMBASE, Cumulative Index of Nursing and Allied Health Literature (CINAHL), the Cochrane Library and ClinicalTrials.gov were searched using the terms heart failure and caregiv* as well as the keywords ‘careers’, ‘family members’ and ‘lay persons’ for studies published between 1948 and September 2012. Inclusion criteria for studies were: informal CGs of adult HF patients–either as dependent/independent variable in quantitative studies or participant in qualitative studies; English language. Exclusion criteria for studies were: formal CGs; pediatric, adult congenital, or devices or transplant CGs; mixed diagnosis; non-empiric reports or reports publishing duplicate results. Each study was abstracted and confirmed by two authors. After CG activities were identified and theoretically categorized, an analysis across studies was conducted.

Results: Forty papers were reviewed from a pool of 283 papers. CGs contribute substantively to HF patients’ self-care characterized from concrete (weighing the patient) to interpersonal (providing understanding). Only two studies attempted to quantify the impact of CGs’ activities on patients’ self-care reporting a positive impact. Our analysis provides evidence for a rapidly developing science that is based largely on observational research.

Conclusions and implications of key findings: To our knowledge, this is the first systematic review to examine CGs’ contributions in depth. Informal caregivers play a major role in HF self-care. Longitudinal research is needed to examine the impact of CGs’ contributions on patient self-care outcomes.